Social Security (Special Rules for End of Life) Bill [Lords]

Part of the debate – in the House of Commons at 3:20 pm on 8th September 2022.

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Photo of Jessica Morden Jessica Morden Chair, Statutory Instruments (Joint Committee), Chair, Statutory Instruments (Select Committee), Chair, Statutory Instruments (Joint Committee), Chair, Statutory Instruments (Select Committee), Shadow Vice Chamberlain of HM Household (Whip), Shadow Deputy Leader of the House of Commons 3:20 pm, 8th September 2022

I join in congratulating Ministers and the Secretary of State on their new appointments. I do not think that anybody wants to delay the legislation further for the 30,000 to 60,000 people who will benefit from the change, so I will confine my remarks to Second Reading.

It is a pleasure, as ever, to speak in support of the Bill, which represents an important milestone in the long struggle to improve how our benefits system treats the terminally ill. That we are debating this vital legislation in Government time is not an accident but the result of years of dogged work by organisations such as the Motor Neurone Disease Association and Marie Curie, both of which were of huge support to me when I introduced a ten-minute rule Bill on the subject in 2020. It is also, as others have said, testament to many local volunteers who support those organisations’ work in their communities. On that note, I thank Judith Rice and the very active south-east Wales branch of the MND Association that brought the issue to my attention and has continued to lobby for change.

Like Drew Hendry, I pay tribute to campaigners across the country including Mark Hughes and Michelle McCluskey. He is quite right that this is their victory, along with those organisations. I also pay tribute to my very good friend Madeleine Moon, the former Member for Bridgend, who I see is in the Gallery. I am glad that she is here to see our proceedings. Her campaigning work on this and her zeal was born out of her own tragic loss. She was particularly dedicated to the cause. The hon. Member for Inverness, Nairn, Badenoch and Strathspey, as chair of the all-party parliamentary group for terminal illness, did a lot of good work in this area by calling out the systematic injustices faced by those living with terminal illness. I thank Mark Jackson from Marie Curie as well as Alison Railton and Lana Ghafoor, both formerly of the MND Association, who were of great help to both the all-party parliamentary group and to me on the ten-minute rule Bill.

I also thank the Government for listening. While I and others will be critical of the delays in getting legislation to the Table over the last two or more years, I am grateful that we are here today and that Ministers have recognised the broad cross-party support for this change. I thank the former Minister, Justin Tomlinson. There was dogged campaigning on this issue, but he did listen and move things forward. Today, he has had the chance to set out some of the complexities, which will be on the record.

As others have outlined, the Bill will bring an end to the hated six-month rule: a cruel stipulation that forced many of the most vulnerable people in our society to prove that they had six months or less to live to receive benefits under those special rules. The six-month rule was always illogical for those living with complex and unpredictable terminal illnesses such motor neurone disease, given that an exact prognosis of life expectancy within a half-year window is often impossible. It is a disgrace that so many households were pushed through that inhumane bureaucratic hoop at a time of unimaginable pain and worry.

Thankfully, as others have said, the six-month rule has already been removed from the special rules claims for ESA and universal credit, and the Bill will ensure that the same is true for PIP, attendance allowance and DLA. It is crucial that the Bill has a swift passage onto the statute book. For that reason, colleagues in the Lords ensured that it passed through the other place unamended. On behalf of terminally ill people in my constituency and those across the country who simply cannot afford to wait any longer, I support a similar course of action here. The six-month rule may soon be consigned to history, but there is still so much more to do to ensure that terminally ill people are afforded the dignity and respect they deserve from our social security system. I want to speak to some of those connected, ongoing injustices today.

The three-year award duration rule is still in place, forcing terminally ill people to reapply for their benefits if they live for longer than three years. The Motor Neurone Disease Association has pointed to cases where people who outlived their prognosis but were extremely ill—completely paralysed, ventilated or unable to speak—received letters telling them their benefits would stop unless they made a new claim. As with the six-month rule, that is not just cruel but illogical. For example, an applicant can receive a 10-year personal independence payment award with only a “light touch review” after a decade of having a severe or lifelong disability, but if they have a terminal illness they might be made to make a full reapplication after just three years. That makes no sense.

Another issue to look at going forward will be the 12-month rule, which has replaced its six-month predecessor. While it is clear that the DWP wanted to ensure that some timebound definition for the special rules remained in place, it is important that Ministers commit to reviewing the impact of the change to see if it is having the desired effect, or whether significant numbers of terminally ill people are still being disadvantaged. The Government must be diligent in monitoring that and keep all options on the table for the future, including looking at whether a timebound model is more appropriate than a timescale-free approach, such as the one adopted in Scotland. I hope the Minister can speak a bit more to that later on and at the very least commit to a regular evaluation of the new system.

It is important to note that the Bill will not be enough in itself to protect dying people from falling into poverty. As Marie Curie pointed out—this was also raised by Patricia Gibson at business questions—the Bill covers access to benefits but not the adequacy of those benefits. Research shows they are all too often inadequate in meeting the impact on finances caused by the additional costs and loss of income that follow a terminal diagnosis. Marie Curie highlighted the cumulative impact of the benefits cap over the last 12 years, which has meant that in real terms working-age benefits are now less generous than they were under the last Labour Government. Benefit rates had fallen behind inflation over the last decade, even before the current cost of living crisis. Marie Curie’s research shows that 90,000 people die in poverty each year in the UK, with those of working age twice as likely to fall into poverty at the end of life. That number is only likely to have gone up over the last eight months, with household bills, the price of food and other essentials going up and benefit rates not rising to meet the shortfall. We face the prospect of more terminally ill people falling into poverty.

I urge the Government to engage with Marie Curie on its “Dying In Poverty” campaign, which had its launch yesterday in Parliament. The campaign’s aim is to ensure that everybody with a terminal illness is able to access the financial support they need to cope with the cost of housing, energy, childcare and disability at the end of their life. That is really important. It includes looking at proposals to ensure that terminally ill people of working age are able to access their state pension early, and, in the immediate short term, at targeted support on soaring energy bills for terminally ill people given their particular vulnerability to fuel poverty.

This afternoon is one of the rare occasions when the whole House is united in our determination to improve how our social security system treats some of the most vulnerable people in our society. That is important, and this legislation is really important. What is doubly critical, however, is that the changes represent a starting point rather than a full stop. We must do more and strengthen our resolve to ensure that none of our constituents or loved ones ever face the indignity of spending their final months worrying about whether they will have enough money to make it through the week. Until the wonderful day that cures are found for the wretched terminal illnesses that blight so many lives, our priority should be to ensure that our welfare system affords every dying person the dignity, decency and respect they deserve. It cuts to the core of what we want our social security system to be and what we want our country to stand for, but I am thankful today for this legislation.